Tag Archives: #artTherapy

“Last Blooms of the Season” found under the large pine tree outside of the studio a few days after the first snow.

Sometimes, quietly sheltered knowledge blooms in the strangest and most unexpected places at the best possible moment.

On the Arachnoidits Journey, as in the Journey of Life itself; there are many questions we have that cannot be answered or resolved by the practices of “modern” medicine. I attempt to keep open eyes, ears, and mind for rumblings of sound guidance from many assorted sources.

(DISCLAIMER: I am in no way affiliated with the marketing or compensation received by these individuals. I am in no way “professionally” qualified (read “certified”) to assess the value or merit of the information or references provided by them. I am sharing this information as an experienced patient who has found some comfort in the knowledge shared by these people willing to share the insights they have collected along the way. What you do with this information is done at your own discretion under the influence of your own ability to weigh the benefit/risk value of the written word.)

My list of Go-To-Gurus

Anne Morrow Lindbergh, Author, Gift From the Sea

Alan Alda, Author, If I Understood You, Would I Have This Look on My Face? Adventures in the Art and Science of Relating and Comminicating

John S. Workman ~Author of Fireflies In A Fruit Jar: On Religion, Politics, and Other Wonders by a Southern Preacher-Turned-Journalist

Norman Cousins ~Anatomy of An Illness on combating life-threatening illness through humor and patient participation in care.

Vanessa Couto ~ Liminal Astrologyweaving elements from archetypal astrology, depth psychology, storytelling, dreamwork and art in her coaching and mentoring approach, she helps broaden the understanding of life’s stories, and view the path ahead with more clarity and confidence.

Sarah Love ~ I Stand For Love IS A MOVEMENT THAT CULTIVATES AND CELEBRATES LOVE WARRIORS AROUND THE WORLD just like YOU.

Susan Jenkins~Shamanic Healing ~bringing over 30 years of experience to her practice as a shamanic healer.

Today was a busy day in the studio. Took some time to work on the “Coq Au Vin” table top that I am making for my kitchen. Glad to see it a little bit closer to “ready”.

Sometimes, it seems as if these projects take me so much longer than they should. It is nice to be documenting the progress this way so that I can see how far I have come since I began the drawing in September.

A couple of discoveries: Gator Board does not receive water color (or any other media) in the same way that paper does. After all this time, I STILL get frustrated during the learning curve. I miss painting every day.

Now a word from our sponsor….You can buy the “The Cog Au Vin” Rooster pattern here. And the full Table Top Design pattern here.

I have decided to participate in Leah Piken Kolidas’ Art Every Day Month Challenge atCreative Every Day during the Month of November. For the first time, as I do this 30 day challenge, I will be posting my progress HERE for arachnoiditis survivors and advocates.

I hope you will join me for this creative journey. If you are an Arachnoiditis Survivor creating any art during the series that you would like to share with The Art For Arachnoiditis Project feel free to do so in the Art For Arachnoiditis Project Facebook page, share links in the comments below, or submit the work for use in YEAR 2 of the Survivors’ Art Exhibit. (Accepting Entries until Feb 15, 2016.) Although the Art By Survivors’ exhibit is open only to the Survivors; other creative minded individuals are invited to share in all of the other places.

SUBSCRIBE to get the quarterly Art For Arachnoiditis Project Newsletter

SHOP Awareness Art,Your purchase will benefit the Art For Arachnoiditis Projects at the studio. These fair market prices are not tax-deductible purchases.or Make a tax-deductible contribution via our Fiscal Sponsor, NYFA [New York Foundation for the Arts] Or by check payable to the New York Foundation for the Arts, Memo: The Art For Arachnoiditis Project mailed to: SheilaLynnK Art Studio, 345 South Main Street, Wellsville, NY 14895.

To submit original art to this catalog to benefit the Art For Arachnoiditis Project Awareness Efforts. Send submissions with your signed Art In-Kind Form to sheilalynnk@yahoo.com subject line: Add My Art

This is the first time I will be doing daily art for The Art For Arachnoiditis Project. If you have never seen these posts before; you can get a better idea of what this is all about by checking out a A Few of my Similar Month-long Projects/Posts/Series from the Past.

My 30.30.30 [30 Days, 30 Pieces/posts, 30 minutes each] activities have previously been posted on my blog and on my facebook page. The most recent one I did in September 2015 is available HERE, April 2015 started HERE:

Today the words are my creative genre of choice. Survivors are encouraged to submit written entries, including but not limited to Survivors’ Stories for YEAR 2 of the Art For Arachnoiditis Project. Entry Deadline Feb. 15, 2016.

Right now, I am thinking and so… WRITING ABOUT VANITY and LIVING AND WORKING WITH ARACHNOIDITIS

In the past, as I got ready to go to work or out to dinner or some other socially exposed activity, I would say, “I am going to go get a little less human before I go out.” This meant, the usual shower, hair, make-up routine was going to monopolize the bathroom for about an hour. Doing the things that “enhance our natural beauty” so that we blend in with the rest of the people doing the same is an expected, if not required, prerequisite for mingling in “civilized society.”

In high school, I remember this ritual being as much about masking the real me as it was about “creative individual expression”. Military service and parenting reduced my interest, compulsion and dependence upon it. Gradually, it just evolved into my morning routine without much fanfare of creative input.

Survival and recovery impact the individual sense of vanity. Be it the superficial cliche concept of “beauty” or a long-lived appreciation of our “inner beauty”, our self-image seldom escapes the experience unscathed. For all time but, especially, in modern culture; the pressure to conform to the concepts of beauty and grooming of the status quo is directly linked to our ability to be taken seriously by the influential populations of society.

Not only must Survivors overcome the physical limitations imposed upon them but, we must also find a balance within ourselves which allows us to reconcile the alterations in our physical appearance which result from that struggle. Sampson I am not, but I have to admit to a certain deep depression when the immune response associated with Spinal Arachnoiditis caused much of my hair to break and fall off. I kept telling myself, “It’s just hair. It’s not that big of an issue. You have bigger problems to worry about right now.” All of which were true statements that did little to alleviate an increased sense of injury to my person and my own perceptions of my place in society at that time.

Because it is a habit that is an intrinsic part of our culture which we grow into and except, until or unless, it is threatened or the ability to “conform to the norm” becomes complicated, we don’t realize that, “Hair is an object of intense elaboration and preoccupation in almost all societies. Hairstyles and rituals surrounding hair care andadornment convey powerful messages about a person’s beliefs, lifestyles, and commitments. Inferences and judgments about a person’s morality, sexual orientation, political persuasion, religious sentiments and, in some cultures, socio-economic status can sometimes be surmised by seeing a particular hairstyle.” The Social Meaning of Hair ~ Chicago Kent Law Review

For whatever genetic/environmental reasons, I began getting grey hair when I was 23 years old. I was okay with that until my son came home from school one day and said, without any malicious intent, “You know Mom, you kind of look like that bag lady that hangs out in front of the grocery store. I think it’s because of your hair.” So, I began coloring my hair.

For some of us Living with Arachnoiditis, increased chemical sensitivities are a consequential outcome. In addition to the adverse reactions to medication trials for “treatment” of Arachnoiditis; several years ago, I began to notice a remarkable increase in my pain and inflammatory symptoms after I took the time to color my hair. Keep in mind this was NOT a routine occurrence. At that point I was only doing it every three months or so. The correlation was difficult not to notice. So, I cut back on it even more and changed the use to only the color that washes out in 28 days. Still, I only used it every few months. Gradually, I decreased it to only using half the product at a time to streak a color similar to my natural color into my hair. I was okay with a white streak here or there that reminded my of my mother but was not ready to be “openly grey” just yet.

The reasons for this effort? I have been brain- washed. Yep. Also known as, accepting the cultural norm, I had come to associate my OWN impression of my health and wellness with my physical appearance and was painfully aware that the people around me did, too. When my hair color was all washed out and faded I didn’t look “vibrant, young and energetic” but more importantly, IN MY OWN EYES; I didn’t LOOK “healthy”. Since then, I have, in many ways, re-defined that word “healthy” as it pertains to my self awareness.

As I write this, I am still struck by how frivolous this topic feels but, I KNOW that women AND men depend on how others see them as a means to social connection and “success” in society. The reality is, that our appearance can condemn us to a marginal existence. Subconsciously, we fight against that. We think nothing of using the convenient products available to us to allow us to prevent that from happening.

After the damage, I found shampoos and strengtheners for my hair that allowed it to grow and “recover” from the inflammatory phase of my illness. I began searching for more natural ways to add a little color to my hair but, I continued using the 28 day partial hair color treatments in moderation about every 3 months. Looking “healthy” is,after all, directly linked to feeling “healthy” …isn’t it?

Back In The Day When Mousse was new and thick eyebrows were cool.Profile Picture 2012Profile Picture 2015

I was cool with that. UNTIL… I found out about all of the neurotoxins and carcinogens these products contain. Considering my first hand knowledge of my post- arachnoiditis -onset sensitivities to polyethylene glycol in Miralax…a frequently prescribed “safe” treatment for issues associated with spinal cord injury…I came to the logical conclusion that perhaps the contents of these commercial products may NOT be the safest thing for me or for anyone already dealing with extensive nerve damage from OTHER causes.

There is a period of adjustment in which our body must rediscover the ways to balance our natural oils after we stop using the products which have created an artificial rhythm for them. It was summer, I washed and rinsed using the “no-poo” method, put my hair up and went on with my day. It took a little time for me to find out what my hair type really is without all of the artificial additives coating it. I discovered the baking soda wash option wasn’t the best thing for me.

Economic Hardship is not a rare consequential condition of Spinal Arachnoiditis. The COST of organic hygiene and hair care products is exorbitant. As I have been exploring the nutrition value of the naturally occurring plants here, I decided to find out which ones can be used to better feed my hair, too. This is what I found …and for me, it works!

Making all natural shampooMaking all natural hair dye from Black Walnut husks.

Don’t get the wrong idea. I have as many bad days AND bad hair days as anyone else. Some days my hair is just so fragile and breaks off in piles or just looks so ridiculous that I am tempted to go back to the commercial method. But, I am determined to see this experiment through.

I REALLY want to know if leaving these chemicals behind will reduce the amount of pain I experience. Winter will be the true test. I am coming to truly believe that the use of these and other chemicals is directly proportionate to the extent of my “Recovery” and the frequency of my “Flares.” I now make my own shampoo, conditioner, and deodorant for personal use. Because of my increasing exploration of Ancient Wisdom and the Wild Edibles and resources available in my own back yard, this experiment is exactly in my price range.

Additionally, this experiment is having a residual positive outcome that I did not expect. I feel more empowered and in control of what happens to my body because I KNOW exactly what is going into it. This feeling is PRICELESS.

And well, we absorb so much from the environment through our skin, how can it possibly make sense to intentionally ADD the harmful things?

I have to admit that I feel a bit conspicuous on my cray-cray hair days if/when I have to go out in public but, I am starting to understand that my hair actually has cycles which relate to the rest of my body in a way that was hidden by commercial products. It really was only NATURAL that it fell apart when my body did.

WHAT YOU SEE IS WHAT YOU GET, OR IS IT?

On the bad days, I don’t want to feel what you see any more than YOU want to see what I feel. It’s human nature to want to avoid the negative and to “fit in” with those around us…to want to be accepted by those who reside in the social circles we wish to engage. However, it is too easy to lose track of what really matters when we only focus on that instead of who we really are….

For Arachnoiditis Survivors and others Surviving with “Invisible Illness” the craving for connection can be quite harmful when we let it interfere with what our bodies really need. I am still learning to listen to my body and to take action to DO the things that support its strengths and acknowledge or possibly repair its weaknesses.

NEW DISCOVERIES (November 24, 2015) As my hair continues to break off because of its naturally fragile state, I kept looking for organic methods to strengthen it. The challenge is to find the ones that grow locally. Egg whites are also reported to help, however, I have a difficult time rinsing them out with organic shampoo. In any case, I just came across a line of organic products by Shear Miracles (not an affiliate link) which contains many of the plants that I have been unable to find here.

I don’t expect to find them this year. Snow is falling as I write this. I am going to try the Tuff ‘N Up Shampoo. It is a little pricey for me. However, after removing all of the chemical-based ingredients from my hair, it really doesn’t take much to clean it. I definitely don’t need to wash it every day anymore. About a dime-sized dab of the purchased ‘poo twice a week should be enough. In between, I can continue to use the healthy home made mix that I have here…if I need it.

I have decided to participate in Leah Piken Kolidas’ Art Every Day Month Challenge atCreative Every Day during the Month of November. For the first time, as I do this 30 day challenge, I will be posting my progress HERE for arachnoiditis survivors and advocates.

I hope you will join me for this creative journey. If you are an Arachnoiditis Survivor creating any art during the series that you would like to share with The Art For Arachnoiditis Project feel free to do so in the Art For Arachnoiditis Project Facebook page, share links in the comments below, or submit the work for use in YEAR 2 of the Survivors’ Art Exhibit. (Accepting Entries until Feb 15, 2016.) Although the Art By Survivors’ exhibit is open only to the Survivors; other creative minded individuals are invited to share in all of the other places.

SUBSCRIBE to get the quarterly Art For Arachnoiditis Project Newsletter

SHOP Awareness Art,Your purchase will benefit the Art For Arachnoiditis Projects at the studio. These fair market prices are not tax-deductible purchases.or Make a tax-deductible contribution via our Fiscal Sponsor, NYFA [New York Foundation for the Arts] Or by check payable to the New York Foundation for the Arts, Memo: The Art For Arachnoiditis Project mailed to: SheilaLynnK Art Studio, 345 South Main Street, Wellsville, NY 14895.

To submit original art to this catalog to benefit the Art For Arachnoiditis Project Awareness Efforts. Send submissions with your signed Art In-Kind Form to sheilalynnk@yahoo.com subject line: Add My Art

This is the first time I will be doing daily art for The Art For Arachnoiditis Project. If you have never seen these posts before; you can get a better idea of what this is all about by checking out a A Few of my Similar Month-long Projects/Posts/Series from the Past.

My 30.30.30 [30 Days, 30 Pieces/posts, 30 minutes each] activities have previously been posted on my blog and on my facebook page. The most recent one I did in September 2015 is available HERE, April 2015 started HERE:

I have intended to share these with the Arachnoiditis Survivor community for a while now. My daughter saw them online and asked me to create some for her that illustrated some of her own interests. I made them for my daughter in March 2015. Now Seems like a good time to share them with you.

I have decided to participate in Leah Piken Kolidas’ Art Every Day Month Challenge atCreative Every Day during the Month of November. For the first time, as I do this 30 day challenge, I will be posting my progress HERE for arachnoiditis survivors and advocates.

I hope you will join me for this creative journey. If you are an Arachnoiditis Survivor creating any art during the series that you would like to share with The Art For Arachnoiditis Project feel free to do so in the Art For Arachnoiditis Project Facebook page, share links in the comments below, or submit the work for use in YEAR 2 of the Survivors’ Art Exhibit. (Accepting Entries until Feb 15, 2016.) Although the Art By Survivors’ exhibit is open only to the Survivors; other creative minded individuals are invited to share in all of the other places.

SUBSCRIBE to get the quarterly Art For Arachnoiditis Project Newsletter

SHOP Awareness Art,Your purchase will benefit the Art For Arachnoiditis Projects at the studio. These fair market prices are not tax-deductible purchases.or Make a tax-deductible contribution via our Fiscal Sponsor, NYFA [New York Foundation for the Arts] Or by check payable to the New York Foundation for the Arts, Memo: The Art For Arachnoiditis Project mailed to: SheilaLynnK Art Studio, 345 South Main Street, Wellsville, NY 14895.

To submit original art to this catalog to benefit the Art For Arachnoiditis Project Awareness Efforts. Send submissions with your signed Art In-Kind Form to sheilalynnk@yahoo.com subject line: Add My Art

This is the first time I will be doing daily art for The Art For Arachnoiditis Project. If you have never seen these posts before; you can get a better idea of what this is all about by checking out a A Few of my Similar Month-long Projects/Posts/Series from the Past.

My 30.30.30 [30 Days, 30 Pieces/posts, 30 minutes each] activities have previously been posted on my blog and on my facebook page. The most recent one I did in September 2015 is available HERE, April 2015 started HERE:

The weather was reasonably cooperative for November in Upstate New York. I decided to have my BF just drop me off for my morning appointment and then walked around Main Street to distribute these. IF you are new to my arachnoiditis experience; the ability to do this in November is quite a gift. The consequences… by the time I got back up the hill to the studio I had to get horizontal ASAP. Therefore, I waited to make my Day 5 art.

And then more of my “other life” happened AND I waited to make my Day 5 art. I finally got back to the computer and put together this digital alteration of a photo I took while on my morning adventures. After posting, again, that horizontal surface was calling my name.

The day whizzed by and my awesome GS was getting off the bus.

S-o-o-o still ….No “Art” BUT, I did make my first-ever, not-too-fancy-but-made-with-real-yeast-not-from-a-Mix, home made loaf of bread. Which several hours later became our Toast ‘N Cheese Sandwiches for dinner. Awesome GS says this was a successful creation. He is 5.

Trying to be REAL Bread

As I have been in pursuit of all things (okay…as many things as possible) organic in my life, including eliminating all chemical/commercial hygiene products; In addition to making my own shampoo and deodorant (since August) it has been my hope to devolve to the point where I no longer buy my bread at the store. Eventually, I intend to create my own breads using the wild edibles (like dock seed, amaranth, and lambsquarters) which I have been harvesting and collecting from my own back yard. THIS Month I made the leap and bought NO Bread when I went out for my monthly supplies. With a subconscious shadow of the old ways looming in my mind, I just got yeast to go with the other ingredients I already have here. [I am not to the point yet that I am ready to try to make bread from the wild “yeast” in the air.] Believe it or not all of this really does combine together to an end result that is ART. I live in my studio and am gradually working my way toward all natural art supplies, too. However, that is a whole ‘nother blog post.

AND...my bloggy-gratitude-posts this month are being spread out between my social media pages so that I can make time to do THESE posts… “Today I am thankful I found the gigantic rolls of crystal clear Frost King Plastic for the Studio Windows!”

I have decided to participate in Leah Piken Kolidas’ Art Every Day Month Challenge atCreative Every Day during the Month of November. For the first time, as I do this 30 day challenge, I will be posting my progress HERE for arachnoiditis survivors and advocates.

I hope you will join me for this creative journey. If you are an Arachnoiditis Survivor creating any art during the series that you would like to share with The Art For Arachnoiditis Project feel free to do so in the Art For Arachnoiditis Project Facebook page, share links in the comments below, or submit the work for use in YEAR 2 of the Survivors’ Art Exhibit. (Accepting Entries until Feb 15, 2016.) Although the Art By Survivors’ exhibit is open only to the Survivors; other creative minded individuals are invited to share in all of the other places.

SUBSCRIBE to get the quarterly Art For Arachnoiditis Project Newsletter

SHOP Awareness Art,Your purchase will benefit the Art For Arachnoiditis Projects at the studio. These fair market prices are not tax-deductible purchases.or Make a tax-deductible contribution via our Fiscal Sponsor, NYFA [New York Foundation for the Arts] Or by check payable to the New York Foundation for the Arts, Memo: The Art For Arachnoiditis Project mailed to: SheilaLynnK Art Studio, 345 South Main Street, Wellsville, NY 14895.

To submit original art to this catalog to benefit the Art For Arachnoiditis Project Awareness Efforts. Send submissions with your signed Art In-Kind Form to sheilalynnk@yahoo.com subject line: Add My Art

This is the first time I will be doing daily art for The Art For Arachnoiditis Project. If you have never seen these posts before; you can get a better idea of what this is all about by checking out a A Few of my Similar Month-long Projects/Posts/Series from the Past.

My 30.30.30 [30 Days, 30 Pieces/posts, 30 minutes each] activities have previously been posted on my blog and on my facebook page. The most recent one I did in September 2015 is available HERE, April 2015 started HERE:

I am posting a lot about the prep for the exhibit on my blog during my Thirty, Thirty, Thirty 2015 blogpost project. This year 30.30.30 means Thirty days, Thirty Posts, Thirty minutes each.

Here is the post from Day 9.

Map of the Survivors Collage
is based on entries submitted for our live digital Map

The Map of the Spinal Arachnoiditis Survivors Registered at the Art For Arachnoiditis Project

has evolved into a mixed-media Google Maps collage project. At 218 registered Survivors, it requires some creative placement of all the parts to ensure we don’t leave anyone out.

Each registered location will be marked with Arachnoiditis Awareness Map Pin. Assembled and contributed to the project by Linda Funsch, the designer of the Awareness Ribbon.

The Map came late to the project plan. As more people discovered the project it seemed to make sense to find out where they were from. The next step was to keep a record of it so that Survivors in geographic proximity could find each other and share resources.

After that, it seemed appropriate to create something which will show how this project is bringing Survivors together from around the world.

Originally intended as a large community youth project, a serious illness interrupted the group leader’s plans. So, the Map is now slowly being created in my studio. I believe it will continue to transform as this project grows.

Sanctuary and Boundaries

I hadn’t really envisioned the map as a collage project. The Method Muse of my Sanctuary Collage seems to have adhered itself to other projects in the studio.

Other Transformations…. The Opening Reception Workshop (for a fee) has evolved into a FREE Independent Adaptive Art Activity. Those attending will have the opportunity to create an art project using the Ostrich Cot. The Activity will be timed to show the importance of Time Management when Living and Working with Arachnoiditis.

New Supplies for the Independent Adaptive Art Activities

Ostrich Cot with NEW face cushion
and Drawing the Survivor Portrait for Karen

Even My Ostrich Cot is still transforming. My NEW cushion for my face arrived today. The cot works quite well as is when you get it. I have found though that when it is re-purposed for long term and frequent use it helps to add individual ergonomic adjustments and pain relief tools (i.e. extra padding under the abdomen, a knee pillow, neck and shoulder heating pad, etc.). The Ostrich Cot helps me to remain productive during my horizontal time. I sometime push myself to stay vertical too long because I have other work to do or simply because it’s really stinkin’ boring just laying here looking at the ceiling.

I keep saying I am going to paint a mural on the ceiling as another method of working horizontally but, I haven’t quite worked out the logistics or the balance to climb up and down from the scaffolding so that I can lay on my back to paint it. Another one of those Projects for Another Day.

TRIGGERS

In the world of work, art, chronic pain, permanent disability, personal evolution, and self-employment there are many triggers to transformation. One of those is a true appreciation for the work of other artists.

This morning a friend showed me a wonderful video of the making of a Papier Mache Dragon Trophy by Dan Reeder as I was in the middle of appreciating the quality of the time lapsed video and looking forward to seeing the end result my friend said,

“This is time lapsed and taking a really long time. It must be months and months of work! We’re talking MONTHS! What you’re doing is nothing!”

In an instant my appreciation was stifled by the initial hurt– immediately followed by the wordless amazement I had for this friend’s inability to comprehend the scope of what I am doing.

Knowing absolutely nothing about the artist, I didn’t feel I could respond with anything like, “What else is he doing with his time? What other obligations does he have? What limitations is he working with? How long can HE be vertical before he has to stop working?”

All of these thoughts machine-gunned through my mind. The safety must have been on my mouth-trigger. No words came out.

The majority of my work relies on self motivation and self discipline. My faith in what I am doing is often undermined by weaknesses in those areas. lack of validation, a perceived lack of proof that it matters to anyone else…and some doubt as to my ability to actually DO these things at all.

This tense cloud hung over my day. Pushing it to the back of my mind, I continued working and enjoying parts of my day. Eventually, a muscle relaxer was involved to ease the consequential muscle spasms. (This is an established result of STIFLING since onset of arachnoiditis. I should know better.)

I was angry…not exactly at my friend…I had a lot of mixed disappointment-laced feelings there that I still haven’t quite figured out. I reminded myself that this person has a well-deserved place in my heart.

To dwell on this one thing and take it out of context, no matter how truthfully he had just inadvertently expressed his lack of knowledge about what I do, was not fair to our friendship. Although it was a pretty insensitive thing for him to say, I am certain there was not any malice intended and, well… there is no unwritten law that states he must fully grasp the time, effort, process, or outcome of my work. …but, it would be nice if he (and other people) did.

I think part of my anger was about the way that even after all this time I STILL felt like I had to justify and defend what I am doing. I shouldn’t feel any need to compare my life, circumstances, or work to that of this (or any other) artist. There is no need to quantify or explain it to my friend(s). I sense no compulsion from them to do anything like that in reference to what THEY do.

I see this as a Trigger, not JUST for muscle spasms, but as a push to STOP falling back into that place.

Old habits die hard. It is long past time for me to transform into a person who fully accepts that THIS is who I am. THIS is what I do. IT and I have value that does not need validation from any other source. I am not who I thought I’d be…but, “I am exactly the person that I WANT to be.” Amanda Palmer

Together We Fight to Change Tomorrow.Together We Fight to Change Tomorrow #2

Life With Arachnoiditis Co-founder, Karen Kovacik Early, believes Life With Arachnoiditis must be approached with an attitude of hope. She knows, first-hand, that it is a daily struggle and that some days are easier than others. When I first discovered I had arachnoiditis, Karen, a complete stranger to me at the time, was one of the few people who took the time to help me figure out what was happening, and more importantly, helped me to find the courage to discover my own way to have a Life with arachnoiditis stabbing its way right through the center. Because living is truly about so much more than survival, I will be eternally thankful for her support, assistance, and guidance during that very difficult time.

This is her Arachnoiditis Survivor Story as posted on the Life With Arachnoiditis Website.

Shared here with her generous and open-minded consent; she is the next recipient of

Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm in America.

Hi there! I’m Karen. Friends call me KK, Smiley, Curly, Dances with Deer and now Dances with Wahoo! My claim to fame is my sense of humor even in the face of uncertainties. After all, isn’t life uncertain? Isn’t every day a gift? Isn’t that why today is called the “present” … because it is a “gift?” I’ve been up, down, and I’ve been blessed beyond measure as I have touched the face of this illness many times escaping relatively unharmed. I have hope and faith in knowing we will find answers for those suffering much worse than I have ever been.

Let me be brief with my history. At age 12, I had a serious car accident in which I was thrown through the windshield and back into the car. Transfused with 32 (yes, 32) units of blood and suffered a cardiac arrest. In the 60’s, people did not live through that level of trauma. I was blessed. At age 21, I had my first spinal fusion: L4-L5-S1 and did great until a car accident in 1980. They found broken rods in 1981 and they fused L4-L5-S1 and removed instrumentation. That surgery was not successful, however, I thrived through 23 years running 5K’s, jogging daily, swimming and being as active as possible until November 2003. Let me also add I had an undiagnosed neck fracture resulting in severe spinal stenosis at C5-C6 which was repaired in 2001, coming out of surgery with less pain than when I went into surgery. In November 2003, I developed CES (cauda equina syndrome) and had emergency surgery on a Saturday. Surgery lasted 6.5 hours when it was anticipated it would take 3 hours. They found a real mess. L3-L4-L5-S1 was cleaned up with my surgeon carefully removing scar tissue scattered throughout my spinal canal with bone fragments encapsulated inside. He then fused and inserted 2 state-of-the-art spacers plus instrumented with rods and screws from L3-S1. I recovered beautifully although I had to learn to walk unaided and learn to balance again which I did from the morning following surgery. In June 2006, I fell down a flight of stairs without realizing I was injured. By October 2006, I was experiencing another round of more serious CES. In November 2006, I underwent a fusion revision adding L2 to L3-L4-L5-S1. Another spacer was added at L2-3. L2 to S1 was reinstrumented with new rods leaving screws intact from L3-S1 adding new screws at L2. It was during this time we believe a nick in the dura may have occurred causing arachnoiditis, and/or exacerbating, existing arachnoiditis. Let me give credit where it is due: my CES was twice successfully resolved by my highly skilled surgeon, George Frey, MD, Colorado Comprehensive Spine Institute.

Some months following the last surgery, there seemed to be no diagnosis found for new pain and neurological issues. I had a sense there was more to the situation and sought out another opinion on my own across the state at Durango Spine. Lance Hamlin, PA to Dr. Youssef, identified the arachnoiditis in under 2 minutes of MRI review and explained it to me. At that time, a spinal stimulator was mentioned as a possible option. Instead, I opted for physical therapy which helped immensely. Then I started researching in an effort to find answers. Since November 2008 I have been in experimental treatment which is proving to be highly successful for me. It is my firm belief my arachnoiditis is not progressing. It is anticipated that I will remain in treatment indefinitely. MRI follow up is planned to be able to quantitatively document my progress sometime around the three year mark.

A natural approach to my Arachnoiditis continues. My progress from November 2008 to present is nothing short of a miracle. My current IV therapy is not a formal clinical trial rather a natural approach to treatment overseen by my physician/researcher (an ACAM provider and integrative medicine physician). I do NOT recommend anyone attempt to duplicate this therapy without the guidance of your doctor. I’m the first one to admit some of our efforts have made me ill while other efforts have been stellar performers.

I’ve learned the “impossible just takes longer!” With all my heart, I hope we are going to be able to “document” a reduction in the inflammatory disease process we believe may be involved with Arachnoiditis.

My natural therapy began November 2008 when I was in extreme pain and having difficulty walking and balancing. June 2009 I was able to walk 4.4 miles four to six times a week. Other activities include mountain biking, snow skiing, whitewater paddling, snorkeling, fishing, hiking, swimming, boating, and more. I traveled to the Mexico beach in February 2009 and spent most of April 2009 in South Florida and the Florida Keys, fishing and snorkeling. My pain level is decreasing every day. Leg and nerve pain is almost non existent and my back no longer aches every second. My regularly scheduled pain medications were reduced to ZERO as of May 25, 2009. I am having the time of my life.

My IV therapy consists of high dose vitamin C and magnesium given intravenously ideally at least once a week. We are detoxifying with high dose vitamin E, high dose cholecalciferol (vitamin D3), high dose omega-3-acid ethyl esters and Nattokinase. There are other items included in my treatment which seem helpful. We would hope to be able to demonstrate reduction of the scar tissue within a few years via high resolution MRI.

For those of you suffering from Arachnoiditis, may I suggest as mandatory reading: Anatomy of an Illness by Norman Cousins. There is a significant psychological component to health and wellness. Norman Cousins outlines his true story written after his diagnosis with an incurable terminal illness. Mr. Cousins was able to return himself to an acceptable quality of life utilizing high dose vitamin C therapy, laughter and faith. Each of us has a duty to utilize faith in an effort to improve our own situation. I believe faith is involved with the placebo effect that has been measured in past medical studies. You MUST read Mr. Cousins’ book …. the foundation of my fight for life was formulated from this book.

Under no circumstances should anyone interpret my story as medical advice nor employ any attempts at this therapy without a doctor supervision. My very experimental therapy, as outlined above, is not detailed in an attempt to prevent anyone from attempting treatment without a professional. Should you desire more information, please have your physician email me and I will be happy to refer your doctor to my doctor.

Again, my love to you all. I am here for you. I do not represent my treatment as a cure for you … it has worked for me. Karen – Email kkovacik12@netzero.com

This is “My Journey” –This write up is not medical advice nor does it represent any endorsement by LWA. Information represents my “personal journey” and is written in hopes of encouraging you to seek out ALL avenues of treatment.

My Decision to “Stand up and FIGHT” – Prior to diagnosis I was experiencing CES symptoms, nerve pain and a host of other symptoms. When diagnosed in 2008, I was devastated. Then I decided, ” I’m not a quitter. I’m going to STAND UP AND FIGHT!” I decided to pull out all the stops and fight like I’ve never fought before. **Attitude is everything**

January 2009-June 2009: January 2009, I was still taking 300+ mg Demerol a day. As of May 25, 2009, my Demerol intake is zero. January 2009, I took 30mg-60mg diazepam per day. As of June 5, 2009, I do not take diazepam (dalium was prescribed daily from 1997 for severe muscle spasms). January 2009-March 2009 I was able to go snow skiing, hiking, fishing, snorkeling, boating, beachcombing and traveling. June 18, 2009 I achieved my goal of walking 6.0 miles WITHOUT pain medication. Nerve pain has gone from 24/7 to a few times a month. I rarely have serious pain. This sounds outrageous, but it is my path. I am healthier than many 30 year olds. I am 57 years old and I have Arachnoiditis.

August 2009: I remain free of narcotics and diazepam. Nights are still tough and I have insomnia generated by diazepam withdrawal (diazepam withdrawal is difficult and quite prolonged). I found reducing my hikes from 6 miles to 4.4 miles allows for more hikes. July 2009, I paddled class IV whitewater and paddled a 4 day 75-mile kayak trip on the Green River in Utah sleeping on the river banks for 3 nights! I also flew to Florida for my high school reunion to celebrate with friends.

November 2009 (3rd patient has IV therapy): I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising. I am narcotics free over 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. For a few months now I have had twice weekly IV therapy. Ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water. Almost all leg nerve pain is gone … most of the time. It kicks up when I go skiing. I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart!. The past few weeks I have crawled into bed at night without pain creeping in after a few minutes. I am so thankful and so very humbled by the progress we’ve made.

January 2010:I am still able to work and play without pain medication. Still taking 3000mg Robaxin per day. I’m also using valerian root for muscle spasms and taking GABA supplements now.The Patricia Kane Protocol was absolutely helpful to me. I’ve found I cannot receive both ascorbic acid/magnesium and the Patricia Kane Protocol the same day. I need at least a day or two between the treatments.

February 2010 (4th patient has IV therapy): This journey has taken me places I never dreamed I would be. Patients from all walks of life have contacted me from all over the world. New friends and new challenges lie ahead. Dear new friendships have been made and I would not have missed these new friends for the world. I’ve been able to meet four patients with Arachnoiditis.

March 2010 (5th patient has IV therapy): An MRI this month revealed some significant impingement at C3/4-C4/5, just above C5/6 fusion done around 2000/2001. I was able to see Lance Hamlin at Spine Colorado in Durango and he is as awesome as ever! I’ve started physical therapy and traction at home in an effort to strengthen my neck. Worst case scenario will be surgery at C3/4-C4/5 which I am going to work to avoid at all costs. Pain medication was required at initial onset for 2 days and has been required several times for extreme pain. I am still battling neck and arm pain as of March 18, 2010 but I appear to be making progress. I’ve just completed a 5 mile hike today and it is my 5th hike this week.

IV therapy continues and remains the mainstay of my treatment. A new patient has again come on board and also had great initial results to two initial treatments. Connie Keeler in Tennessee remains improved and follows a similar course. It’s a long road and there are no “cures,” but remission/improvement seems attainable. This is excellent news.

April 23, 2010: I continue to battle neck issues although the pain is not nearly as severe as in March. Spine Colorado (Durango) continues to track my progress in three week intervals. I am very pleased with Lance Hamlin, the PA at Spine Colorado. If surgery is the ultimate route, I remain confident I will get excellent care. We realize surgery is one of the worst possible risks with Arachnoiditis. Surgery will be considered only after all other options are exhausted. Intermittent pain medication has been used for the neck injury issues (a few times a week) with less than satisfactory results.

This month I traveled to Islamorada in the Florida Keys to visit friends. It required me to miss IV therapy and I went two weeks between IV’s. By the tenth day I was starting to experience pain from Arachnoiditis (I did not take my liposomal vitamin C and glutathione with me as I did in the prior trip). Within 12 hours of IV administration on my return, my back and leg pain again totally disappeared. I wish the IV therapy had the same effect on my neck injury, it does not. I’ve been hiking 3-5 days a week, weather permitting. As much as I wish I could say IV therapy is a “cure,” I feel it is a “roll back” and/or “remission state.” This alone is a Godsend and, for the immediate future, I continue in IV treatment to be able to live a full life.

Last week, another patient was experiencing horrific pain (she was not on IV therapy). She was administered the IV protocol and experienced dramatic improvement in pain levels. The IV therapy continues to demonstrate pain relief in all the patients receiving the same protocol as mine. This is very encouraging. I suspect, in time, this protocol might be considered one of the “mainstay” treatments in helping to squelch the inflammation.

May 06, 2010: Things are back on track. I’m feeling extremely well. The neck issue has subsided, FINALLY. Back up to hiking 5 days a week (weather is finally cooperating a little bit). I have to say, the exercise is not optional… the endorphins really help the pain levels. No narcotics on board and May 25th will mark the ONE YEAR MARK since I’ve been off regularly scheduled pain medications! There were maybe 3 or 4 weeks where I had to have pain meds 2 or 3 times within a given week due to the neck injury in March and April. June 3rd will be a year off diazepam. WOW. Now preparing for Congress in July. It is so exciting to be able to go to the Congress meeting and I can’t wait to share my path. God is good … all the time.

June 14, 2010: What an exciting 6 weeks it has been. Ascorbic IV was ramped up to 60 grams, PK Protocol ramped up to maximum levels, bioidenticals on board, chelation once weekly, liposomal ascorbic and glutathione have been back on board for about a month. I feel GREAT. Robaxin down to 500mg a day.

I don’t think I’ve ever felt as much excitement as I do for the upcoming Congress and our trip to Chambery, France. Packing has begun and I leave June 25 for Knoxville, TN to pick up Connie Keeler. We fly to Paris for four days of fun on June 26, then on to Chambery with the rest of our group on July 1. We are READY!

November 5, 2010: The Congress event was amazing. Transcripts will be available when they are able to be completed, a long and time consuming process. I learned at Congress there is another Arachnoiditis patient that has gotten his life back through a similar process but without IV therapy.

At Congress, I was privileged to meet Dr. Jan-Peter Warnke, the only surgeon in the world performing a particular type of thecaloscopy for Arachnoiditis. On viewing the procedure via video at the Congress, it became clear why it may work for patients with no other options. An Arachnoiditis friend of mine had surgery September 19, 2010 and was “pain free” by mid October. An amazing accomplishment. Another great advancement and hope for the future.

A note on IV therapy: The order of administration of the solutions seems to make a huge difference. In October it was necessary for me to be away for an extended period of time due to a health emergency with my parents. I had treatment in Florida and they administered the PK Protocol before the ascorbic/mag. While side effects were far less, pain relief was also far less. We tried the protocol turned around for 3 treatments …. it does not work well at all for me. I am home and we have reversed the order back to 60 grams ascorbic/4 grams magnesium first, then the PK Protocol last. There are more side effects, yes, but definite difference in pain relief. It may take a few more treatments to gain back the ground I lost.Experimental treatment continues to work for me.

November 30, 2010: My new physician, Dr. Eugene O’Neill, of Rio Grande Hospital Clinic, refuses to read the literature supplied to him on Arachnoiditis on Oct. 19, 2010. Dr. O’Neill is unwilling to learn anything about my disease or the Patricia Kane Protocol. He says he doesn’t have the time and his malpractice insurance won’t cover it. On my last visit on Nov. 30, 2010, I brought Dr. Sarah Fox’ short paper ….a brief Summary about Arachnoiditis for busy physicians. When I told Dr. O’Neill I’d like to briefly discuss this paper so he could understand why I refuse preventative tests (mammograms, pap smears, other preventative tests), he went into a tirade about the PK Protocol, that he would not prescribe pain medication to even one more patient, how a patient sued him for saving his life, how 80% of the local population of patients in Monte Vista, Colorado are seeking narcotics and selling them, and said maybe I should go to Washington to see Ralph Holsworth. Never have I met a physician that cares about his patients less.

December 3, 2010: Received a call from Dr. Ralph Holsworth yesterday. He has located a new provider for me familiar with the PK Protocol and willing to administer the ascorbic/mag IV.

December 2010 – March 2014: It’s been a long time since I updated patients. December 2010 through June 2014 found me in Florida living with my mom and dad on an emergency basis as a court appointed guardian. My dad passed away in January 2011 and mom passed June 2013. During this time frame I found a local practice to continue my IV treatment but have had no real physician guidance for Arachnoiditis.

While in Florida, I joined the VAST senior swim team. Unbelievably, I have competed in local, state and international level swim competitions medalling at all levels! In 2011, I swam two relays with 3 team mates setting two new state records. In 2012, I swam first place at state level in backstroke. I’ve medalled in freestyle, backstroke and breaststroke. Who knew I could swim? The swimming definitely keeps me in shape. AND, IT EMPOWERS ME! When I slip into the pool, I am called by a nickname Coach Gary gave me the first week on the team, “Martini.” I think of Martini like Clark Kent changing in the phone book into Superman. When I change into “Martini,” I tell myself I can do anything, I really do.

New issues have presented themselves. Adjacent segment issues both sides of C5-C6 along with a C7 radiculopathy. Adjacent segment issues at T12/L1. March 2014 was my first lumbar MRI since starting this journey in 2008. It reveals Adhesive Arachnoiditis is still present. The ultimate result of IV treatment seems to be found in keeping the inflammation in check that keeps pain under control most of the time. Structural damage to my spine from repetitive surgeries continues. If I am honest with myself, I have not been overly diligent during this three year time frame to stick to the protocol that best controls pain and symptoms.

WHAT NOW? What happens now is a choice I think. I can crumble under the news and be ultra cautious avoiding too much activity. Or I can strictly follow the protocol and do everything I possibly can to stay active. In the past some of my children have become very angry with me because I chose to do things that “could” result in pain and injury. From where I sit, I have gone through a lot of hell to sit on the sidelines. The very point of extensive surgery was to be able to participate in life. There is no guarantee, not for any of us.

During the past 5 years I have lost multiple friends and patients to the fire of Arachnoiditis and the number seems to be increasing. I think they would be very disappointed if I gave up. I can absolutely see Claudine in my mind’s eye as I swim. In my mind’s eye Claudine is healthy, jumping up and down, clapping and cheering me on from Heaven. I choose to live life to the fullest. I can see Sheila laying down on her artist bed creating art and “showing up” for life each day, videoing her efforts and incredible courage. I choose to show up. I see Terri and so many others fighting the political machine to prevent more Arachnoiditis patients. I choose to cheer them on.

What now? Back to the protocol, back to the pool and bike. I choose activity, courage and to show up. I AM HERE. And I still believe, “Together we change tomorrow.”

Contact and Updates:

To stay updated on my activities, send a friend request on Facebook. Look up Karen Kovacik Early and in your friend request message box, please identify yourself as having read my bio on Life With Arachnoiditis and I will accept your friend request.

Go to www.acam.org to learn more about alternative medicine. I’ve learned the “impossible just takes longer!” I am very close to having my life back … it will be a life long journey I believe.

Life with Arachnoiditis is a not-for-profit group open to EVERYONE. Our mission is to provide a hope-filled environment highlighting information, education and research. We also offer one-on-one communication with others affected by Arachnoiditis, Epidural Fibrosis, Failed Back Surgery Syndrome and other related spinal disorders.

Very few things compare to the naked vulnerability which develops after that sense of violation that comes from being harmed by somebody we trust. Arachnoiditis blows our soul-fortress away.

“It’s … difficult to explain. It’s … it’s like … I think it’s as though everyone has a small place inside themselves, maybe, a private bit that they keep to themselves. It’s like a little fortress, where the most private part of you lives—maybe it’s your soul, maybe just that bit that makes you yourself and not anyone else.” His tongue probed his swollen lip unconsciously as he thought. “You don’t show that bit of yourself to anyone, usually, unless sometimes to someone that ye love greatly.” The hand relaxed, curling around my knee. Jamie’s eyes were closed again, lids sealed against the light. “Now it’s like….like my own fortress has been blown up with gunpowder—there’s nothing left of it but ashes and a smoking rooftree, and the little naked thing that lived there once is out in the open, squeaking and whimpering in fear, tryin’ to hide itself under a blade of grass or a bit o’ leaf, but….but not….not makin’ m-much of a job of it.”~Diana Gabaldon via her character, James Fraser, in Outlander, Chapter 36: MacRannoch – Page 760

Later, to Claire.… “Yes?” “Ye know the fortress I told ye of, the one inside me?” “I remember.” He smiled without opening his eyes, and reached out a hand for me. “Well, I’ve a lean-to built, at least. And a roof to keep out the rain.” ~Diana Gabaldon via her character, James Fraser, inOutlander, Chapter 62: Absolution – Page 832

Although I didn’t realize it at the time, the photography & paper sculpture shadow box project that eventually became Still Standing was the lean-to I was building for my naked soul. ” Surrounded by these grief-ridden walls and painfully fettered to my limitations, each frame inside of that box is a pane of glass belonging to the window that the world tried to close against me. It is my window. Window to this soul and window to the world, I decide when it opens and when it closes. In the infamous words of G.W., “I am the decider.” ~Sheila L. Kalkbrenner, in Today is Friday, from Still Standing, Sometimes; the Art For Arachnoiditis Project Book.

HEALING ART ACTIVITY #20 ~ in 3D, create a safe place for that naked, vulnerable version of yourself that was exposed when arachnoiditis became a part of your daily existence. A blade of grass, a bit of leaf, the materials are up to you.

Here are some suggestions, remember~ It doesn’t have to be a house. Your shelter can take on any form that feels appropriate to you made from materials that suit your creative comfort zone, physical abilities and resources.

The individual definition of shelter and safety has an infinite variety of visual representations and imagery. What does YOUR safe place look like? I often have to remind myself that there is a fine line between confinement and shelter. So, in doing this activity in my mind I try to remember to create an opening, a crack for a window or a door with a latch that I can unlock to get out and open to permit others to come in.

Mixed Media drawing completed for the winner of the Multi-media house contest on the studio face book page. 2013 The offer was to award the winner a mixed media drawing of his/her favorite architectural structure. The winner chose this one. It is a birdhouse built on family land in memory of her father.

After you complete your project, Submit your Registration Form if you would like to submit it for the Art For Arachnoiditis Project on-line Gallery. Updates on Calls for Entries by Arachnoiditis Survivors will be posted on Sheila Kalkbrenner’s Patreon Page. .

As I was working through Day 21 and Day 22 of FLOW #30dayjournal project I accepted that Living Well with Arachnoiditis means developing a delicate balance between the decision to Fight or Flee. My natural inclination is to FIGHT! against the injustice that allows arachnoiditis to occur…to FIGHT! against any threat to those I love…to FIGHT! against the arachnoiditis-related threats to my independence…

FIRST GENERAL ORDER OF THE U.S. ARMY: “I will guard everything within the limits of my post and quit my post only when properly relieved.” I am pretty sure that I believed this mantra even BEFORE I joined the Army. Active duty just made it stronger.

“Adjust to the object and you will find your way around or through it.”

Artwork by Zenpencils.com by artist Gavin Aung Than from Day 22

As I mature, I am beginning to realize that there are ways to “guard” the intangible valuables of our lives without active, physically and emotionally exhausting aggression. To Survive and Live Well we must choose our battles carefully. Save our resources for the battles that matter and fight at a pace that will NOT conquer our inner strength.

Apathy is the enemy of progress but, being geared toward constant combat will be the death of me. I can’t/won’t be the doormat under the boots of corruption but ammo explodes to its demise after its launched into the fray. The Happy Place lies somewhere in the middle.

Fighting for and maintaining my happiness and the happiness of those around me must always be my priority. The other battles, although very important, are secondary and require a support team.

if you struggle with feeling good (~Lisa Sonora)

“Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it.You have to participate relentlessly in the manifestations of your own blessings.And once you have achieved a state of happiness, you must never become lax about maintaining it. You must make a mighty effort to keep swimming upward into that happiness forever, to stay afloat on top of it.”— Elizabeth Gilbert, from Eat, Pray, Love

Don’t give up. For the sake of happiness, be selective. Perhaps it is best to avoid the lonely fights that trap and bind us at the bottom of the ocean. Unite the forces which breathe life into our efforts. ~slk

“Ferdinand ran to the middle of the ring and everyone shouted and clapped because they thought he was going to fight fiercely and butt and snort and stick his horns around. But not Ferdinand. When he got to the middle of the ring he saw the flowers in all the lovely ladies’ hair and he just sat down quietly and smelled.”

Ferdinand Flowing in Flowers

ART ACTIVITY #19

Expanding on the FLOW suggestions from the Day 22 post,

Step 1: Reflect on the most difficult battle you are fighting today, this week, this month, this year.

Step 2: In your journal or on another surface, cut, paste, draw, paint a representation of this battle.

Step 3: Find the music that comforts you during this struggle.

Step 4: Listen to this music as you draw a symbol of yourself flowing peacefully in and around the structures and obstacles of this combat zone to come out the other side in one piece.